This is something you may or may not know. A child diagnosed with leukemia today has close to a 90 percent chance of survival. This is still an amazing statistic to me when I consider that that same child, had they been born the year I was born, would have had almost no chance of surviving. The reason that this phenomena has occurred is because of the bravery of children and parents over the last 50 years. When there was no hope, parents agreed to allow their children to be treated with new drugs. When there were signs of progress, parents continued to sign up for clinical trials so their child could be part of the answer. Today, even when we win so often, parents and children still enroll on clinical trials because they know that those remaining percentages are not just numbers – they are children.
I spend a lot of time thinking about this, both in my job and in my work on my book. In my job, more often than I like, I have had to spend time justifying why an insurance company should have to pay for a child’s treatment when they are on a clinical trial. There are insurance providers out there who are eager to jump on those words and label it experimental and ineligible for coverage. These are not crazy new therapies that we are talking about. These are, most often, tweaks to the standard of care treatment. The intent is to see if something new added or something old subtracted can edge up that survival rate. We also want to bring down the number of kids who have lifelong complications from the powerful treatment that they endure to cure their disease. I experience these disputes happening more often. I fear a result of this will be less willingness to enroll on one of these trials.
I was having one of those days yesterday at work. The issue on board just seemed so simple to me, but nothing that I was saying seemed to make a difference. There were several people involved, and we seemed to be getting nowhere. And then Ellie called.
Ellie is one of the family members of the main characters in the book that I am writing. I had a heck of a time finding Ellie. I knew that she existed. I knew she had married, and I had what I thought was her last name. I searched databases and sent out numerous hopeful letters. I missed many times. After more than a year of this, I came across an article that spelled her name a little differently than what I thought. I went back to work, and I was pretty sure that I found her. I sent another letter. The Saturday morning that my phone rang and I saw the caller ID is still crystal clear in my mind. My heart double-clicked. I answered the phone not knowing if she would be okay that I contacted her, or if she would be angry with me.
We talked several times over the next few weeks. The first conversations were cautious and polite. I was not sure how much she knew about the story that I had, and I certainly didn’t know her well enough to understand how much she would want to know. She was a widow well into her 80s. Who was I to bring my business into her life?
Turns out, we have become each other’s gift. I have filled in blanks for her. Some were things that she had not cared to know of at the time. Most were things that the family just did not talk about. I sent her pictures, articles, a recording of her father’s voice. She sent me pictures, documents, and has shared stories from her memories. Finding her has been more than I could have hoped for. We are now a part of the other’s life and we talk now just to catch up. Sometimes something new comes up that one of us wants to share, but mostly it is just to chat.
That is what happened yesterday. Ellie called to chat. The big news was that she had returned from getting her check-up at a major hospital where she had gotten a new heart-valve as part of a clinical trial. It had been a year, and part of the trial requirements were periodic follow-up visits. We talked about how that meant traveling several states away, but it was important to her to have her information kept as part of the study. It was important for her, because this new heart valve was a miracle for her. She was back in her twice weekly bowling league!
Talking with Ellie made me happy. I asked her if she would share with me any issues that she had with insurance. She laughed and said she had been told that she would not be covered, but she fought it, and she won.
If that’s what we have to do, that is what we will do.